Twin girls with cerebral palsy recovering from spinal surgery together
Six-year-olds have questions as they begin long road to recovery, mom says
In many ways, Katelyn and Meghan Rogers are typical six-year-old twins.
The girls, from P.E.I., rely on each other, share the same clothes, the same activities — and the same challenges.
That's why, when they underwent spinal surgery to improve their mobility last month in Montreal, their mother says it was important they go through that together too.
"They rely heavily on each other, they motivate each other," said Andrea Rogers. "So it was really kind of a no-brainer for us for them to be able to do it together."
Both girls have cerebral palsy, a neurological disorder that affects a child's motor skills, movements and muscle tone.
But they never saw themselves as "being sick or being broken and needing fixing," Andrea said, which made it difficult to explain to them why they needed surgery in the first place.
They ask a lot about why they have the surgery and they used to be able to walk and now [they] can't, so it's hard to justify that to a six-year-old.— Andrea Rogers
"You'll be able to walk again," she tells them. "You'll be able to run again, you might be able to walk faster or maybe you'll be able to play soccer."
In the meantime, they have to relearn basic motor skills such as crawling and rolling because the surgery — selective dorsal rhizotomy — reduces the spasticity, or tightness, in the muscles, leaving them with a "noodly" feeling, Andrea said.
"What the surgery does initially is take away a lot of the skills they have."
The recovery is intense, she said. They are using walkers. They do physiotherapy and occupational therapy daily. In between, they work with a school teacher at the hospital who co-ordinates with their school, Westwood Elementary, to keep up with Grade 1.
"They are troopers," Andrea said. "They don't talk about pain. They maybe don't really know how to describe it but they ask a lot about why they have the surgery and they used to be able to walk and now [they] can't, so it's hard to justify that to a six-year-old."
Katelyn had the surgery Jan. 24 and Meghan on Jan. 28. Andrea is staying with them at the Shriners Hospital in Montreal while their father, Kevin, travels back and forth while juggling work on P.E.I.
They are due home on March 15, but the recovery will take years — they'll each have physio three times a week for the first six months to a year. That in itself is proving to be a challenge in a province short on physiotherapists.
"We've been talking a lot with folks in the health department to try and work out a solution," Andrea said. "They've agreed at this point that there will be some funding through the new accessibility program. It used to be disability support program, but it's up to us to find the practitioners."
She said the support from family, friends and the community has been "overwhelming." A fundraiser for the Rogers family is being held Saturday night starting at 6:30 at West River United Church.
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With files from CBC Radio's Island Morning